Saturday, March 25, 2006

BC on Autism Episode 9: Who are these people? (mov)





Watch the video


Just a quick look at some sites while I'm wondering about what goes into a blog, specifically the who and why. While it seems obvious that beliefs are interfering with objective analysis, it is also apparent that there are more than one way to interpret iffy or gray-area results. But what baffles me is the outright extremism that is nonchalantly expressed by some. Whatever.

12 Comments:

At 3/26/2006 2:24 AM, Blogger Autism Diva said...

Hi BC,

Autism Diva is just your average Diva. The lightening rod thing probably has something to do with the tiara.

:-)

Who is this BC guy? Whoever he is he's pretty smart and his blog has had some good discussions on it, too. Where would we be without the explanations of heavy duty biochemistry that you share so nicely with video.

 
At 3/26/2006 10:03 AM, Blogger Kev said...

Arrgggh!

The Hub's still screwed on Safari! The shame! I must get that sorted out.

 
At 3/27/2006 1:25 AM, Anonymous lisa r said...

I finally gave in after five years and downloaded Quicktime in order to see this. It was worth it!

 
At 4/10/2006 12:46 PM, Blogger Kristjan Wager said...

Your comment about seeing the same people comment on the different blogs is quite right. I don't read all the autism blogs every day, or some times even every week, but every time I come back, I recognize at least 95% of the commenters.

 
At 5/12/2006 1:03 AM, Anonymous zilari said...

Very interesting. First time I have ever watched one of these movie bits...and I note that you ask, "Who are these people, and why are they doing this?"

In my case, I just wanted to help combat the rampant misinformation that seems to proliferate on the Web regarding autism and the spectrum. I read some of the completely ridiculous outside claims as to what people thought it must be like to be autistic -- and realized how completely off-base many of those observations were.

I was somewhat shocked, for instance, to discover how many people just didn't have any idea about sensory issues -- that maybe the reason one's kid is having a fit in the mall is because the crowds and lights are bothering her. Or because her socks are too scratchy. Things like that. And the notion that we're all sick or suffering (not true at all).

And a lot of baseless assumptions about "how autistic people think" including a sort of amazement at the fact that we think at all. So I figured I had something of a responsibility, as an autistic person with Web access and an interest in neurology and ethics, to help fight ignorance with information and analysis.

 
At 6/07/2006 9:08 PM, Blogger iaMacG said...

BC, I have enjoyed your presentations. Let me tell you about my daughter. She just turned 9 and had her triennial IEP. She had a battery of tests which put her developmental age at 18-19 months. Her IQ, which admittedly is hard to measure which she doesn't understand the questions asked is estimated to be between 39 and 52 with a 0.90 confidence level. She has made precious little academic pogress in the past five years.

My daughter is non-verbal and the other commmunications methods such PECs are presently beyond her.

She is however, a beautiful happy child, and a real treasure. Her behavior has greatly improved. My hands and arms are no longer scarred Her scratching and biting is now ony a bad memory.

I am very much for a cure for autism. No, not something comming from the alternative medicine community, but something real. Although the chances of that are remote.

Many sites say that autism is not only to be accepted it is to be celebrated. These sites are ften run by a high-functioning autistic, or the parent of one.

I find nothing to celebrate, no joy, in her condition. Her condition is not what defines her. Austistic or not she is a person and made in God's image. I accept her, I do not accept her condition cannot be changed.

We've tried ABA she showed marginal improvement. Unlike the Mauruce children. She didn't grow to love her exercises. We took her to a DAN doctor who wanted to control her energy fields. We didn't return. We kept her gluten and cassein free and fooled ourselves for a while that it made a difference. We tried B-12 elixirs. We would ask ourselves "What is the possibility of harming our daughter?" and not worry about the truths of the claims. We treated anecdotes as data. We went as far as seeing doctors on two separate occaisions about starting chelation. But I couldn't go through with it. The evidence was so weak. Not one of the other "miracle" potions we tired had their advertised results. I threw out the suppositories. We haven't considered anything from the alternative medicine community for years.

We are trying RDI now. She still has not bonded with us. Oh she is happy to see my wife or me when we return. But there is no anxiety if we disappear.

Now about those sights which contend we should do nothing about autism. I find that an extremist view. If a cure is found. I don't want to force it on anyone. But to try to prevent a cure from being developed let alone be used does not sit well with me.

To end on a positive note, although some may think otherwise. Her autism led us to God. Our church has programs for special needs children. I met while volunteering at a church run soccer program beautiful girl with Rhett's. She has all my daugher's problems and physical handicaps as well. She cannot stop her drool. Her parents must do everything for her. I pray for her and others. I pray that she overcomes her difficulties and her parents continue to see her as a gift from God.

I did write something similar at Orac. I'm just searching for people who are dealing with children such as mine.

Ian

 
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